I was hit with a big question out of nowhere...

E

Emily65Roses

New member
No I know it. I just wanted to add my two cents because I imagined it had been something you hadn't thought of. My pennies are often coins not from the majority. Heh.

I guess it's just harder for some of the adults to cling to hope like that. I've been hearing the "right around the corner" stuff since they found the CF gene, and that was 19 years ago. I just stopped listening after a while.

I think my mom was much like you, though, when I was a child. Especially when they found the gene, because that was a big fat deal. Can't say I blame you for wanting to hang on it.

This may seem sad, but I personally think it's neat:
I just prefer to hang onto the more realistic stuff for now. The meds that will prolong life are a pain in the butt, they're still meds. But those are actually here right now. They may not be the magic we're all wishing for, but they're awesome to have. Kids with CF these days, as I'm sure you know, are doing a LOT better than they used to. If your kids ever lose some of their hope on the cure idea, do remind them of what they do have that's new and exciting. That Tobi is a pain in her butt... but it's also liable to help her live a lot longer. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I didn't mean to babble my head off, either. Just wanted to make sure you know I didn't come in here looking to burst your bubble. I think that realism is important to keep a hold of so as not to go nuts. But there's a lot of good stuff to look at too. <img src="i/expressions/heart.gif" border="0">
 
E

Emily65Roses

New member
No I know it. I just wanted to add my two cents because I imagined it had been something you hadn't thought of. My pennies are often coins not from the majority. Heh.

I guess it's just harder for some of the adults to cling to hope like that. I've been hearing the "right around the corner" stuff since they found the CF gene, and that was 19 years ago. I just stopped listening after a while.

I think my mom was much like you, though, when I was a child. Especially when they found the gene, because that was a big fat deal. Can't say I blame you for wanting to hang on it.

This may seem sad, but I personally think it's neat:
I just prefer to hang onto the more realistic stuff for now. The meds that will prolong life are a pain in the butt, they're still meds. But those are actually here right now. They may not be the magic we're all wishing for, but they're awesome to have. Kids with CF these days, as I'm sure you know, are doing a LOT better than they used to. If your kids ever lose some of their hope on the cure idea, do remind them of what they do have that's new and exciting. That Tobi is a pain in her butt... but it's also liable to help her live a lot longer. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I didn't mean to babble my head off, either. Just wanted to make sure you know I didn't come in here looking to burst your bubble. I think that realism is important to keep a hold of so as not to go nuts. But there's a lot of good stuff to look at too. <img src="i/expressions/heart.gif" border="0">
 
E

Emily65Roses

New member
No I know it. I just wanted to add my two cents because I imagined it had been something you hadn't thought of. My pennies are often coins not from the majority. Heh.

I guess it's just harder for some of the adults to cling to hope like that. I've been hearing the "right around the corner" stuff since they found the CF gene, and that was 19 years ago. I just stopped listening after a while.

I think my mom was much like you, though, when I was a child. Especially when they found the gene, because that was a big fat deal. Can't say I blame you for wanting to hang on it.

This may seem sad, but I personally think it's neat:
I just prefer to hang onto the more realistic stuff for now. The meds that will prolong life are a pain in the butt, they're still meds. But those are actually here right now. They may not be the magic we're all wishing for, but they're awesome to have. Kids with CF these days, as I'm sure you know, are doing a LOT better than they used to. If your kids ever lose some of their hope on the cure idea, do remind them of what they do have that's new and exciting. That Tobi is a pain in her butt... but it's also liable to help her live a lot longer. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I didn't mean to babble my head off, either. Just wanted to make sure you know I didn't come in here looking to burst your bubble. I think that realism is important to keep a hold of so as not to go nuts. But there's a lot of good stuff to look at too. <img src="i/expressions/heart.gif" border="0">
 
E

Emily65Roses

New member
No I know it. I just wanted to add my two cents because I imagined it had been something you hadn't thought of. My pennies are often coins not from the majority. Heh.

I guess it's just harder for some of the adults to cling to hope like that. I've been hearing the "right around the corner" stuff since they found the CF gene, and that was 19 years ago. I just stopped listening after a while.

I think my mom was much like you, though, when I was a child. Especially when they found the gene, because that was a big fat deal. Can't say I blame you for wanting to hang on it.

This may seem sad, but I personally think it's neat:
I just prefer to hang onto the more realistic stuff for now. The meds that will prolong life are a pain in the butt, they're still meds. But those are actually here right now. They may not be the magic we're all wishing for, but they're awesome to have. Kids with CF these days, as I'm sure you know, are doing a LOT better than they used to. If your kids ever lose some of their hope on the cure idea, do remind them of what they do have that's new and exciting. That Tobi is a pain in her butt... but it's also liable to help her live a lot longer. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I didn't mean to babble my head off, either. Just wanted to make sure you know I didn't come in here looking to burst your bubble. I think that realism is important to keep a hold of so as not to go nuts. But there's a lot of good stuff to look at too. <img src="i/expressions/heart.gif" border="0">
 
E

Emily65Roses

New member
No I know it. I just wanted to add my two cents because I imagined it had been something you hadn't thought of. My pennies are often coins not from the majority. Heh.
<br />
<br />I guess it's just harder for some of the adults to cling to hope like that. I've been hearing the "right around the corner" stuff since they found the CF gene, and that was 19 years ago. I just stopped listening after a while.
<br />
<br />I think my mom was much like you, though, when I was a child. Especially when they found the gene, because that was a big fat deal. Can't say I blame you for wanting to hang on it.
<br />
<br />This may seem sad, but I personally think it's neat:
<br />I just prefer to hang onto the more realistic stuff for now. The meds that will prolong life are a pain in the butt, they're still meds. But those are actually here right now. They may not be the magic we're all wishing for, but they're awesome to have. Kids with CF these days, as I'm sure you know, are doing a LOT better than they used to. If your kids ever lose some of their hope on the cure idea, do remind them of what they do have that's new and exciting. That Tobi is a pain in her butt... but it's also liable to help her live a lot longer. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />I didn't mean to babble my head off, either. Just wanted to make sure you know I didn't come in here looking to burst your bubble. I think that realism is important to keep a hold of so as not to go nuts. But there's a lot of good stuff to look at too. <img src="i/expressions/heart.gif" border="0">
 
B

brewz2

Guest
Thank you so much for clearing it all up - I do so much appreciate all the help, advice and opinions I get here. It's my place to go when I need somebody to just understand me for a minute...

<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
B

brewz2

Guest
Thank you so much for clearing it all up - I do so much appreciate all the help, advice and opinions I get here. It's my place to go when I need somebody to just understand me for a minute...

<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
B

brewz2

Guest
Thank you so much for clearing it all up - I do so much appreciate all the help, advice and opinions I get here. It's my place to go when I need somebody to just understand me for a minute...

<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
B

brewz2

Guest
Thank you so much for clearing it all up - I do so much appreciate all the help, advice and opinions I get here. It's my place to go when I need somebody to just understand me for a minute...

<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
B

brewz2

Guest
Thank you so much for clearing it all up - I do so much appreciate all the help, advice and opinions I get here. It's my place to go when I need somebody to just understand me for a minute...
<br />
<br /><img src="i/expressions/face-icon-small-smile.gif" border="0">
 
N

NYCLawGirl

New member
Tracey, I think you handled the situation beautifully, and you should be very proud both of yourself and of your adorable daughter for having such a positive outlook about CF. You're right that faith and hope are everything when dealing with this disease, and you have a very lucky little girl who will grow up believing that CF won't slow her down because her mom understands that <img src="i/expressions/face-icon-small-smile.gif" border="0">

To add to Emily's point, I remember back when they discovered the gene in 1989 - EVERYONE was convinced that a cure was, literally, "right around the corner." What a long and twisted corner that has turned out to be almost 20 years later! I guess the point is that we all try to keep hope even in the face of some major disappointments, but for those of us in our 20s who came of age in a time when everyone was talking about how soon we would cure this disease and who are still waiting (with many of us now facing the effects of progressive lung disease), it's hard not to be disheartened.

And while it's probably true that more drugs will be added to the CF arsenal before any are taken away, I guess the best we can do is hope that someday CF management will be as easy as a couple of pills each morning, or better yet nothing at all. And all the better motivation to keep up with our treatments NOW, if the reward might be living to see the day when we no longer have to strap on the vest or do hours of nebs. So I'm with your daughter...I'd rather believe!
 
N

NYCLawGirl

New member
Tracey, I think you handled the situation beautifully, and you should be very proud both of yourself and of your adorable daughter for having such a positive outlook about CF. You're right that faith and hope are everything when dealing with this disease, and you have a very lucky little girl who will grow up believing that CF won't slow her down because her mom understands that <img src="i/expressions/face-icon-small-smile.gif" border="0">

To add to Emily's point, I remember back when they discovered the gene in 1989 - EVERYONE was convinced that a cure was, literally, "right around the corner." What a long and twisted corner that has turned out to be almost 20 years later! I guess the point is that we all try to keep hope even in the face of some major disappointments, but for those of us in our 20s who came of age in a time when everyone was talking about how soon we would cure this disease and who are still waiting (with many of us now facing the effects of progressive lung disease), it's hard not to be disheartened.

And while it's probably true that more drugs will be added to the CF arsenal before any are taken away, I guess the best we can do is hope that someday CF management will be as easy as a couple of pills each morning, or better yet nothing at all. And all the better motivation to keep up with our treatments NOW, if the reward might be living to see the day when we no longer have to strap on the vest or do hours of nebs. So I'm with your daughter...I'd rather believe!
 
N

NYCLawGirl

New member
Tracey, I think you handled the situation beautifully, and you should be very proud both of yourself and of your adorable daughter for having such a positive outlook about CF. You're right that faith and hope are everything when dealing with this disease, and you have a very lucky little girl who will grow up believing that CF won't slow her down because her mom understands that <img src="i/expressions/face-icon-small-smile.gif" border="0">

To add to Emily's point, I remember back when they discovered the gene in 1989 - EVERYONE was convinced that a cure was, literally, "right around the corner." What a long and twisted corner that has turned out to be almost 20 years later! I guess the point is that we all try to keep hope even in the face of some major disappointments, but for those of us in our 20s who came of age in a time when everyone was talking about how soon we would cure this disease and who are still waiting (with many of us now facing the effects of progressive lung disease), it's hard not to be disheartened.

And while it's probably true that more drugs will be added to the CF arsenal before any are taken away, I guess the best we can do is hope that someday CF management will be as easy as a couple of pills each morning, or better yet nothing at all. And all the better motivation to keep up with our treatments NOW, if the reward might be living to see the day when we no longer have to strap on the vest or do hours of nebs. So I'm with your daughter...I'd rather believe!
 
N

NYCLawGirl

New member
Tracey, I think you handled the situation beautifully, and you should be very proud both of yourself and of your adorable daughter for having such a positive outlook about CF. You're right that faith and hope are everything when dealing with this disease, and you have a very lucky little girl who will grow up believing that CF won't slow her down because her mom understands that <img src="i/expressions/face-icon-small-smile.gif" border="0">

To add to Emily's point, I remember back when they discovered the gene in 1989 - EVERYONE was convinced that a cure was, literally, "right around the corner." What a long and twisted corner that has turned out to be almost 20 years later! I guess the point is that we all try to keep hope even in the face of some major disappointments, but for those of us in our 20s who came of age in a time when everyone was talking about how soon we would cure this disease and who are still waiting (with many of us now facing the effects of progressive lung disease), it's hard not to be disheartened.

And while it's probably true that more drugs will be added to the CF arsenal before any are taken away, I guess the best we can do is hope that someday CF management will be as easy as a couple of pills each morning, or better yet nothing at all. And all the better motivation to keep up with our treatments NOW, if the reward might be living to see the day when we no longer have to strap on the vest or do hours of nebs. So I'm with your daughter...I'd rather believe!
 
N

NYCLawGirl

New member
Tracey, I think you handled the situation beautifully, and you should be very proud both of yourself and of your adorable daughter for having such a positive outlook about CF. You're right that faith and hope are everything when dealing with this disease, and you have a very lucky little girl who will grow up believing that CF won't slow her down because her mom understands that <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />To add to Emily's point, I remember back when they discovered the gene in 1989 - EVERYONE was convinced that a cure was, literally, "right around the corner." What a long and twisted corner that has turned out to be almost 20 years later! I guess the point is that we all try to keep hope even in the face of some major disappointments, but for those of us in our 20s who came of age in a time when everyone was talking about how soon we would cure this disease and who are still waiting (with many of us now facing the effects of progressive lung disease), it's hard not to be disheartened.
<br />
<br />And while it's probably true that more drugs will be added to the CF arsenal before any are taken away, I guess the best we can do is hope that someday CF management will be as easy as a couple of pills each morning, or better yet nothing at all. And all the better motivation to keep up with our treatments NOW, if the reward might be living to see the day when we no longer have to strap on the vest or do hours of nebs. So I'm with your daughter...I'd rather believe!
 
F

fourkidsmom

New member
Oh Tracy-- you handled that well. My 7 yr old hasn't actually asked that question yet. He knows he is different, it is funny though because the other day he said "Mom you and Grandma just worry about me too much!" It was cute. He is growing up!

Fourkidsmom
 
F

fourkidsmom

New member
Oh Tracy-- you handled that well. My 7 yr old hasn't actually asked that question yet. He knows he is different, it is funny though because the other day he said "Mom you and Grandma just worry about me too much!" It was cute. He is growing up!

Fourkidsmom
 
F

fourkidsmom

New member
Oh Tracy-- you handled that well. My 7 yr old hasn't actually asked that question yet. He knows he is different, it is funny though because the other day he said "Mom you and Grandma just worry about me too much!" It was cute. He is growing up!

Fourkidsmom
 
F

fourkidsmom

New member
Oh Tracy-- you handled that well. My 7 yr old hasn't actually asked that question yet. He knows he is different, it is funny though because the other day he said "Mom you and Grandma just worry about me too much!" It was cute. He is growing up!

Fourkidsmom
 
F

fourkidsmom

New member
Oh Tracy-- you handled that well. My 7 yr old hasn't actually asked that question yet. He knows he is different, it is funny though because the other day he said "Mom you and Grandma just worry about me too much!" It was cute. He is growing up!
<br />
<br />Fourkidsmom
 
You must log in or register to reply here.
Top